ALS

January 9, 2026

The Soundtrack of My Life – 46 – A Minor Incident

Since spotify got off their bullshit to stop running ads for ICE, I have made a happy return to the streaming platform, even though it still uses AI for it’s suggestions and “wrap-ups.” And I thought “why not do another ‘soundtrack post’ with one of the most depressing fucking songs?” So, here it is.

Back when Charlie and I started dating, I got this album for myself from Best Buy (our favorite store at the time, since one had opened up in town) with a Christmas gift card. For whatever reason, this soundtrack makes me think of Christmas time. Maybe it’s because that was when I first saw it or because, of the two main characters, one of them lived on the wealth of their father’s Christmas song.

Also, I have this weird habit that when I fall into “depressive episodes” I will watch the same film on repeat. This was the film, at that time, that I had in a loop.

The story telling/writing in it is phenomenal and has some of my favorite actors in it: Rachel Weisz and Toni Collette. (Rachel Weisz is one of the 3 women who could make my forsake my homosexual life for a hetero one.) The musical score and the songs elevate all of this to another level for me. I had to have the soundtrack as my own.

As I do, I became hyper-fixated on 3 songs on the album. The one of above being one of them. It’s the song written for the scene when Marcus’s mom tries to end her life. The lyrics in it address the loss of words one experiences when faced with someone who attempted and, luckily, failed in their effort. So, what that had to do with Charlie potentially taking a job in Iraq at the time is beyond me.

The logic of teenagers is obtuse at best. They’re melodramatic and find resonance in things that don’t really pertain to certain scenarios. As like this one.

Charlie was an over the road trucker at the time, but he wasn’t making as much money as he wanted. He was always looking out for the next, better opportunity to further his ultimate goal: to be filthy rich like his dad.

As the made up war in Iraq/Afghanistan was killing innocent civilians and rebels fighting the imperial invaders over their oil, a job opportunity was presented to him by his father. His father worked for Oxy at the time. The salary for driving an oil tanker over there paid enormously, but it also was very high risk. (Obviously.)

He toyed with the idea because he wanted the money but terrified because he didn’t want this job to end his life before it even began. I wish I could remember how long he entertained the idea. From my memory it felt like weeks but I’m sure it was just A WEEK if not DAYS. Regardless, I told him, at the time, that I would wait for him when he came back. He told me that would be dumb, but I really wanted to live that “war wife” fantasy.

So in my obsession of the above song and him potentially going off to work in a war-torn country, I dedicated and played it for him, expecting some big “oh, wow, that meant so much” from him. Which shows how little I knew of my future husband at the time. I’m surprised I didn’t hear his eye-balls rolling from across town.

What I find odd about this song is it actually pertains eerily closer to how our relationship ended than it ever did at the start. Even as I listen to it now it was almost like I was casting some magical spell over our relationship and cursing us to the fates we found.

“There’s nothing I can say to try to make you feel okay. And nothing you could do, to stop me feeling the way I do… And if the chance should happen that I never see you again, just remember that I’ll always love you.”

I feel that in my soul, as trite as it sounds. The song echoes of the helplessness one feels watching someone struggle with something you cannot change. Then there is an undercurrent of understanding, that it is out of your hands but regardless the singer will be there. Through all of it.

As it pertains to us, it almost feels like each of us takes a turn singing one verse to the other. And in those verses that I feel Charlie would sing, they bring me comfort, even though the song breaks my heart. It also highly improbable that he would have ever openly admitted those words to me, even if he meant them.

October 27, 2025

“You and I”

One of my favorite time of years is coming up, NaNoWriMo. If you’ve been reading this trash blog for some time you will know I have done this event a few times in the past. The first time I participated, I wrote my first ever novel length work of fiction. The one I subsequently have edited the last 12 years of my life.

For this years assignment I decided that since it starts on Charlie’s and my wedding anniversary (as it does every year) I wanted to write about our life together. It was something I had come up with back in April when I had a TikTok go viral. It was a brief cut of our “Not There Yet…” video blogs along to the song “I love you, I’m sorry” by Gracie Abrams. (I’ll post it below.) It exploded more than I had ever thought possible. And it showed me that people cared. The comments are where it really thrived because I had people tell me their own sad stories or give their condolences. Of the hundreds of messages 98% of them were the beauty and kindness humanity is capable of offering.

This lit a fire in me.

I decided that I was going to write a book about our life together. I began brainstorming and came up with web outlines that really shaped the narrative of our life together. It gave me the perspective that there is something there TO share. It wouldn’t just be a random collection of events strung together with only the narrative thread that I would one day lose him. There was advice for polyamory, infidelity, growth, marriage, family, and eventual loss. And not to forget it would give my husband’s death even more meaning.

But like most of my good ideas, my enthusiasm fizzled out and I was consumed once again by the shroud of my depression. Which is fine. I’m grieving. At least, that’s what I keep telling myself.

To keep my idea alive I kicked it down the road and told myself to do it in November, when I have the chance to participate in the month long writing event. Also, around the same time period of when we started dating in 2003.

I had debated with myself if I wanted to keep it private or post each entry onto my webpage. What I have come to is: for the sake of uninhibited emotions I will write it for myself. Of course, with the intention that I will get it published because why would I write something if not for a reader to read it?

This morning, to get myself in the headspace to begin this month long journey, I put on an album Charlie had given me when we first dated, Jason Mraz’s “Waiting for my Rocket to Come.” It makes me think of him every time I listen to it, and of those early days. This little exercise sent me into a downpour of tears.

The first song on the album is “You and I.” In the past it never really stuck out, but today it did for the simple fact that out of all of the songs on the album (within my “genesis” playlist) this had it’s own album art. Every other track has the actual cover, where he’s sitting on a curb talking to a rooster.

As the song played on the lyrics popped. For the first time I really listened to the song, but within the context of doing this project. It felt like Charlie was talking to me, and that’s what brought about the tears.

(I would post the song for you to listen, but I am no longer using Spotify as they support ICE. And I am nothing if not a bleeding heart hippy liberal douche.)

As a result, where I had been unsure if I was really going to follow through, this gifted me the resolve to actually do it and not just say so. It was my husband prodding me from beyond the grave. Well… beyond the wood box that currently rests on my dresser, in which he resides. (I am cackling at my own joke. I hope you did too.)

@opinionatedandcrazy

My husband was diagnosed with ALS during 2020 and passed 4 years later. Even with a pandemic that didn’t stop us from doing road trips. #als #grief #loss

♬ som original – ᴀᴛʟᴀs
May 2, 2024

Memories and Missed Opportunities

Last night was strange…

I went to bed and in the midst of my mumbling thoughts I started to think about the most random of memories of my husband. Little things, like when I would kiss his neck or the way he would tap his glass as he would take a drink. Then in morphed into thinking of our final day together.

He woke up and was madly messaging all of the people he’s been corresponding with these past few months. Then when he finally got up we watched The Birdcage. For the life of me I can’t even remember what else we watched. I had wanted us to bookend everything with a re-watch of Philadelphia but from behind his mask he firmly said no.

Once it got close to time, we retired to the bedroom and set up chairs all around the bed. We watched an episode of Taskmaster until the nurse got there. She wrote out the instructions to administer the drugs and split. (Which was not the plan by the way, but that is a blog post for another time.)

At 5:30 we took off his mask and waited. Almost exactly 6 hours later he was gone.

I replayed this over and over last night… Thinking of him lying in bed afterwards, there but not. He looked so peaceful. I would go in there and check on him, brush his hair. I could hear his voice screaming in my head “Josh, that is so weird. That’s a dead body. Gross.”

These memories made me miss him so much. I started to cry but stopped myself because I didn’t want to wake up Tony.

Last night I dreamed of Charlie and I adopting a child. We were asking my parents questions about what we would need and they were excited to meet their grandchild. It was such a lovely dream that I didn’t want to wake up. I got to have my family back for a very brief moment of time.

Charlie had said one time that he would be willing to have kids if we adopted. At the time I didn’t want that, I’d rather have a biological child of my own, but I figured if he was willing to meet me halfway I should too. Shortly after his tune changed and he didn’t want kids. This would be the pattern over the course of our relationship, mostly because we had yet to find our groove. We didn’t know what made us work and how to accommodate our shortcomings. By the time we had figured them out and became a stronger couple, we were in the midst of having an open relationship and he wouldn’t want to bring a child into that. Which is a fair assessment.

Then he was diagnosed with ALS.

In hindsight I am glad we never brought children into our relationship. It would have made everything exceptionally difficult, especially once I had to raise them and take care of Charlie all while trying to process my and our child’s grief. Maddening.

I think Charlie would have been an amazing dad. He was so patient and kind. They also would have been fucking spoiled. I know it. Between him and my parents… the kid would have never wanted for anything.

The thought of adopting now just breaks my heart. They would never get to know one of the greatest people of my life. Charlie would be some myth or legend, yet the reality would be so much more.

I’m glad I at least got to feel it in a dream.

April 19, 2024

One Week…

It’s been a week since my husband passed and it still doesn’t feel real. I act as if he is just in the other room or on some trip. Any moment he’ll be back or I’ll get a text from him and everything will be just as it has been these past 3 years.

Something I have discovered about myself is my “reaction to grief.” In writing I can be as vulnerable as I want to be because it’s a blank page or an audience that may or may not be there. I don’t have to worry about whether I sound too calm or too sad and I never risk making someone uncomfortable. Which is something I can’t do in person. When I’m around other people I put my feelings into a steel vault buried deep, deep within my chest. Only under the influence am I able to spin the dial and let them out for others to see in real time. Otherwise, without these explicit parameters can I share how I truly feel.

This past week I have been constantly around someone. Hardly do I get a moment to myself. Which is by design and is not a complaint, by the way. At the surface I’ve done it because I know that Charlie would have wanted me to be there for Tony, his mom, sister, and niece. Especially his mom. So I honor him by doing that, at my own “detriment.” I hide everything I’m feeling to be strong for those around me. Below this truth, lies the pernicious reality that I don’t want to face my emotions. I would rather pretend I’m strong. The unfortunate part is once they’re buried I neglect to ever pull them out again, and they grow into a thorny, viny weed to choke my joy. The one who would do everything to pull them out of me is the one I grieve for in his absence.

This grief is so complicated even without me hiding it.

The other day my mother-in-law asked me if I was “relieved.” This is a part of the entire process that I have tried so hard not to recognize because the very notion fills me with insurmountable guilt… I am.

I’m relieved that he isn’t suffering, that wherever he is he gets to begin again; and I am for myself. The 24 hour requirement for caring is done. No longer will I get requests to move his hands, give him a drink, help him use the bathroom, bathe him, give him his pills, or move him from one room to the next with all the accessories that follow suit. I can finally sit down and just exist without worrying that I will be asked to do something else. And that is where I feel like the biggest piece of shit. How can/could I feel that way when the person I love is gone?

Now I am left attempting to process everything with all of my bizarre idiosyncrasies, the character flaws I’ve developed to cope with the stresses of my life. I’m in therapy but again when I’m talking to someone I am “indifferent.” I reveal nothing because that would be showing weakness. If they knew how I truly felt they would think of me as a burden, or worse they would use my secrets to betray me. (Wow I sound psychotic.)

The other night I fell deep into familiar destructive habits. It was the same shit I did before I ever met my husband, when (then too) I was not facing my trauma. I made some very bad, deadly choices that in the clarity of sobriety I knew my husband would be utterly upset with me. I could hear him in my head, as loud as if he was standing in front of me, that I need to stop doing these things before they get out of control.

For once in our nearly 21 years together I listened with absolute determination.